Thursday, December 10, 2009

Anorexia ≠ autism

Of late, several researchers have been exploring a possible link between anorexia nervosa and autism spectrum disorders. I've never understood why. It seems fairly clear to me that acute anorexia brings with it an altered state of consciousness that has little to do with a person's ordinary state of mind or ability to interact with people. In his seminal study on human starvation, researcher Ancel Keys noted that those in the throes of semi-starvation tend to lose both the interest in social interactions and the ability to pull them off. That certainly echoes my own observations.

Now, thankfully, researchers at King's College in London have come to the same conclusion. The study's authors write, "These findings indicate almost complete normalization of emotion recognition ability in recovered patients, despite the observation of difficulties in both domains in currently ill patients. Findings suggest that similarities between AN and ASD are restricted to the currently ill AN state and such difficulties in AN may be a factor of starvation."

Now, can we move on to more fruitful avenues of research, please? Like developing effective treatments?

23 comments:

It's amazing how often the behaviours and cognitions of simple starvation are conflated with the symptoms of anorexia nervosa.

They are intwined, yes, but let's not get stupid about it. I remember hearing theories that food hoarding and condiment abuse, for example, were unique behaviours that exemplified anorexia nervosa.

My immediate thought was -- wtf? Those are obviously symptoms of pure starvation, and have been well-documented as such (by Ancel Keys.)

It's almost as though people want to attribute some mystique to eating disorders, or to somehow separate the behaviours of eating disorders from "normal" human experience, effectively othering them as something special, yes, but also something inscrutable and therefore unsolvable.

This is a really good blog post about ways that eating disorders manifest for autistics, and how the challenges that eating can present to autistics can look like anorexia: http://thiswayoflife.org/blog/?p=213

The sad thing is, many of my fellow autistics DO suffer from anorexia without the nervosa part. They're not necessarily avoiding food out of any kind of body dysmorphia (although of course ASD can cooexist with that); they simply don't know when it's time to feed themselves because they don't recognize or don't experience hunger signals in the way that nonautistic people have been taught to recognize them. I myself learned at a young age that if I waited until my stomach started growling, I wouldn't eat until I became hypoglycemic. At least I have an "alternate" signal that tells me it's time to take in energy; a lot of autistic people don't have even that, and either have to time their meals or have someone do it for them.

Autistic people do occasionally get true anorexia. I wasn't surprised to learn that they get anorexia at a greater rate than non-autistics, because some of the factors that feed into anorexia are more common among autistics. Factor one: Social rejection, combined with the idea that being pretty means being accepted, and also means being thin. Factor two: Being detail-oriented and often perfectionistic (cognitive traits in autistic people, not emotional ones; details and black-and-white thinking are natural for many autistics, and confer both strengths and weaknesses).

I know at least one autistic person who has had, and recovered from, anorexia nervosa.

What I would like, though, would be the recognition that autistic people have problems with food that can be mistaken for anorexia, simply because of sensory issues that make eating very difficult or hunger difficult to detect; or because of executive function issues that make it difficult to plan meals. For that matter, we're more vulnerable to overeating, too, since it's as likely that an autistic person gets fascinated with a sensation (including taste/texture) as repelled by it; or they might simply not know when they were full.

A fat (probable) aspie here, and I think it's unwise to generalize about these things.

There is apparently often a link between autism spectrum disorders and OCD, and a link (it's thought, genetic) between OCD and anorexia, in that they may be different manifestations of the same underlying predisposition. There's definitely OCD in my family, but I've never shown signs of it. I do suffer from generalized anxiety disorder.

And I did have problems eating a lot of things when I was in the early years of school; it was a texture issue. I know a lot of other aspies have similar issues, and I can see how - probably especially in teens - this could get mistaken for AN. Not the same thing at all, though.

Thank you for all the ASD perspectives.I'm really thinking of this from the other POV--the anorexia perspective. Yes, people who are acutely ill with AN don't do very well socially speaking, but it's temporary and a function of starvation. I know my daughter, for instance, and she has no ASD stuff going on when she's healthy.

This is a bit of a delayed response, but I have an autism spectrum disorder and a long history of anorexia nervosa. The autism spectrum disorder preceded the onset of my anorexia nervosa, and the latter was not associated with a desire to be thin, pretty, fashionable... or a fear of getting fat. I had many sensory difficulties involving food and unusual eating habits pre-anorexia. I was diagnosed with anorexia when I became obsessed with counting calories and seeing how far I could push myself in restriction food. It was all about control; not body image.

Also, note that the above study by Oldershaw et al. is cross-sectional - i.e. comparing sick people with recovered people and healthy controls. It doesn't follow the same group of people over time. Furthermore, a single study doesn't rule out a link between anorexia nervosa and autism!

Unpacking the study abstracts a bit --2007 study (no. 1): There are significant enough comparisons between ASD and AN cognition to warrant developing treatment for AN consistent with ASD neurology. [There's a connection . . .]

2009 study (no. 2): Just like people with ASDs, people with AN lack theory of mind. It's a temporary condition, but when they're really ill they're a lot like people with ASDs.[. . . but it's temporary.]

But your conclusion, if it's not too late in the evening, is AN isn't the same as an ASD so it's time to look elsewhere for solutions, which is not what these abstracts are advocating.

These particular scientists aren't moving AN research away from ASDs but towards them. What they're looking for now is someone who understands autistic social cognition well enough to develop a treatment plan that either speeds recovery/increases its success rate/reaches patients thought to be impenetrable.

Who knows whether or not this research will ultimately benefit the greater AN community. But one thing occurring in the abstracts and your post/responses to others is the tendency to utilize the terms AN and ASD as if they're mutually exclusive. At the very least, one can hope that this research at least benefits people with ASDs suffering from AN.

Thanks for your response to my comment above. If I again 'speak' as an individual with both autism specrum disorder (ASD) and a history of anorexia nervosa (AN):

I agree that most people with AN will benefit from re-feeding to a healthy weight at which the body functions optimally. Re-feeding corrected my anorexic behaviours (relating to food and body) but it didn't correct my ASD. Neither did re-feeding help some of the lifelong eating difficulties I have had, including aversions to certain food tastes, smells and textures.

Gillberg et al have probably conducted the majority of research on AN and ASDs (including longitudinal studies) and have shown that a proportion of people, usually thoose with more severe or longstanding AN, also have ASDs. Their data show that most people with AN don't qualify for a diagnosis of ASD, but some definitely do and are harder to treat because they don't respond as well to (e.g.) family therapy. My ASD played a huge role in the devlopment of my AN because I was bullied and felt socially isolated.

The KCL group do some great research and have focused on autistic traits rather than autism per se. The study you cite focuses of ToM tests, but not on (e.g.) restricted and repetitive behaviours that occur in ASDs, AN and OCD. It may be that people who are susceptible to AN have specific autistic traits which do not lead to a diagnosis of ASD, but which are sufficiently marked to contribute to the development/maintenance of their AN...

Thanks for the clarifying post, Cathy. There's a lot we don't know about both of these kinds of disorders. I agree that re-feeding would never correct underlying/preexisting issues--it simply gets a person back to where s/he was before starvation.

I'm curious about one thing you said in your comment above:

"My ASD played a huge role in the devlopment of my AN because I was bullied and felt socially isolated."

As the dean of feed I spent years studying AN in hopes that my experience as a feeder and fat acceptor and obesity promoter could help these poor skinny women and turn their emaciated bodies into the fat bodies of real women.

Turns out that AN is genetic and organic in nature and there are only 200,000 people with AN in the US and less than 100 die from it each year according to the CDC.

The organicity of AN is very facinating and I have had some luck using zinc suplementation for increasing appetite.

Thanks again for the feedback, and excuse the spelling errors in my previous post...

With regard to your query about my statement: "My ASD played a huge role in the development of my AN because I was bullied and felt socially isolated".

I was very shy and geeky at school. Because I found it hard to fit in I was picked on and bullied. This made me feel I was a worthless person. I grew to hate myself. My self-imposed starvation and over-exercising were in part self-punishment, but they also helped me to control over-whelming anxiety. The starvation of my anorexia nervosa allowed my to avoid over-whelming thoughts and feelings.

Too often, anorexia nervosa is 'blamed' on cultural pressures and attributed to body dissatisfaction. I personally feel that some feminist writers have de-medicalised this mental illness and viewed it as a simple extension of the normal body image concerns that all women have (that is associated with looking desirable/pretty). No, it's totally different. I know many anorexic women who state that they starved because they didn't want to attract attention from others, including men. Some have been sexually abused.

A recent survey of 700 people with EDs conducted by the charity Beat in the UK revealed that over 90% of people with EDs had been bullied, and over half of these individuals stated that bullying/social exclusion triggered their ED.

I do feel it's about time that researchers took the focus away from culture, vanity, media and 'size zero' when attempting to explain the causes of (at least) anorexia nervosa.

There's a huge biological overlap between anxiety disorders and eating disorders. And for some people--like you, it sounds like--semi-starvation actually makes anxiety feel better in the short run. That's part of why it's a self-reinforcing behavior; it makes people feel less anxious initially. Of course malnutrition will in the long run create more anxiety along with depression and other mental health symptoms. But I can see why people often describe anorexia as a coping mechanism, although I don't think of it in that way on the whole.

There's a strong genetic component to eating disorders as well. I would venture to say that 95% or more of women in western culture today are affected by media images of thinness and body image, yet relatively few develop eating disorders. Thank goodness. The rest just don't have the genetic makeup. Lucky for them.

Yes, I agree about the genetic pre-disposition. However, what is still unclear is precisely how genetics influence risk. This may be via the response of the brain to starvation, or by inherent traits such as anxiety, perfectionism, obsessionality - and autistic traits (or by both mechanisms). It is likely that a number of genes are involved.

I also agree that many women are affected by media images of thinness, and many are unhappy with their 'body image', but the majority of these women are healthy. There is no firm research evidence that the media causes anorexia nervosa (even the media is a trigger for dieting, subsequent binge eating and associated purging behaviours). Indeed, the prevalence of anorexia nervosa - which is currently less than 1% of the female population - is no greater in 21st Century than it was 50 years ago.

Have you read the review by Keel and Klump? (I cannot remember precisely when it was published - maybe 2004...). This paper de-constructed the notion that anorexia nervosa is a culture-bound syndrome. As research progresses using (e.g.) functional neuroimaging in patients who are recovered from anorexia nervosa - and possibly in screening children longitudinally, I imagine that the data will provide a lot of support for the hypothesis that anorexia nervosa is a neurological illness that is associated with executive dysfunction, poor interoceptive awareness, and inherent thinking styles and behaviours. As far as anorexia nervosa is concerned, I feel that the media is used as a scapegoat.

BTW, Happy New Year! Sorry for the long discussion on your blog. I'm happy to debate in private!

Have you read 'Anorexia Nervosa and the Body Image Myth' (Zanker CL. European Eating Disorders Review, September 2009). This paper is not about autism, but it does emphasize the complexity of anorexia nervosa.

I have only found these pages tonight so I apologise for my lack of though put into what I am about to say.My 12 year old daughter has never been offically diagnosed with ASD however I have always strongly suspected it. We never went down the official diagnosis path purely because her peadiatrian at the time stated it would do no further purpose other than to 'label' her. In the past few months she has lost over 12 kg.... in the past 12 months it would be around 20kg. She is obsessive by nature,. getting fixed on an obsession and running with it. Never in the past able to fit into a tight social group.. just hanging around the fringes. She lost a bit of weight due to skipping lunch etc and gained praise from her peers for her weight loss. This has snowballed to the point of near hospitalisation (due to low BP, Heart rate and constipation), self harm, verbal abuse and destruction of property. Worst part of all is the anxiety this child has over her weight and food. Having raised my baby for all these years I know how her fixations and obsessions can become all consuming.. add that to teenage angst and the need to fit in and it a very dangerous combination. One of the worst parts I have found is that there is very little help available until she does require re-feeding. I am in shock that such a disease can manifest itself in young people (with such a high mortality rate) yet have such limited options available unless you can afford private insurance.

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About Me

I teach magazine journalism at the S.I. Newhouse School of Public Communications, and write for many magazines and newspapers. My newest book is BRAVE GIRL EATING: A FAMILY'S STRUGGLE WITH ANOREXIA, which will be published by William Morrow this fall. I believe in the power of words to change the world (or at least the interior lives of individuals).